On Friday January 31, 2025, a number of federal authorities datasets went offline. The datasets taken down included some broadly used, large-scale nationwide well being surveys, indices, and information dashboards that inform analysis, coverage making, and media protection about well being care and public well being. For instance, a number of Facilities for Illness Management and Prevention (CDC) surveys and datasets have been offline Friday and Saturday, with messages merely saying the web page “was not discovered.” The homepage of the United States Census displayed an error message, however information.census.gov – the place many datasets may be downloaded – was functioning.
By Sunday February 2, 2025, among the touchdown pages began to come back again on-line – now with a warning message: “CDC’s web site is being modified to adjust to President Trump’s Govt Orders,” suggesting there might be future adjustments. In some instances, survey information recordsdata are again on-line and look like intact, however the survey documentation (questionnaires and codebooks), which researchers use to investigate the info recordsdata, remained offline. Some associated reports additionally remained offline. It’s not but clear whether or not all of the datasets and their documentation that went offline will come again or stay on-line, and in the event that they do, what adjustments, if any, will likely be made. It additionally stays to be seen what adjustments could also be made to future information assortment efforts.
The removing or modification of those information sources seems to be in response to government orders issued by President Trump on his first day in workplace outlining the administration’s views and method to sex and gender and on racial fairness and diversity equity and inclusion (DEI), in addition to a pause on foreign assistance. An Workplace of Personnel Administration (OPM) memorandum on the primary EO directed departments and companies to “take down all outward dealing with media (web sites, social media accounts, and many others.) that inculcate or promote gender ideology” and “withdraw any remaining or pending paperwork, directives, orders, rules, supplies, varieties, communications, statements, and plans that inculcate or promote gender ideology.” One other OPM memorandum equally directed departments and companies to “Take down all outward dealing with media (web sites, social media accounts, and many others.) of DEIA workplaces”. None of those government orders nor the OPM memos particularly point out datasets or survey information.
Federal surveys play a key position within the well being surveillance system, which helps direct initiatives to deal with among the most urgent well being circumstances and issues dealing with the nation. For instance, one of many affected datasets is CDC’s Behavioral Risk Factor Surveillance System (BRFSS), which is among the most generally used nationwide well being surveys and has been ongoing for about 40 years. Datafiles for all years have been quickly offline and as of this writing have been reposted, however with out questionnaires or codebooks. BRFSS is described on one federal website as a supply of state-level “details about well being threat behaviors, preventive well being practices, and well being care entry primarily associated to continual illness and harm.” The survey has been used for many years to tell policymakers, the media, and the general public on a variety of well being subjects, similar to obesity rates, access to breast cancer screenings, vaccination rates, and the share of individuals with pre-existing conditions. With sampling in each state, BRFSS information are notably useful for understanding well being points in low-population states and rural areas.
In reviewing KFF’s archives of the BRFSS core questionnaire, it didn’t embrace detailed questions on sexual orientation or gender id. Nevertheless, in recent times, BRFSS provided an optionally available module on sexual orientation and gender id, which was carried out in most states. This supplemental information has been used by KFF to indicate that adults who establish as transgender are extra probably than cisgender adults to be uninsured, expertise melancholy, and report being unwell. On the time of this writing, the BRFSS information file is again on-line and seems to be intact, together with the query about gender id, although the survey documentation isn’t on-line.
One other of the datasets taken offline was CDC’s Youth Risk Behavior Survey (YRBS), which, since 1990, has tracked highschool college students’ behaviors that may affect well being and social outcomes, like smoking, drug and alcohol use, and dietary and train habits. Like BRFSS, the touchdown web page and related supplies have been offline however, as of the time of this writing, have returned with out questionnaires or codebooks. This survey is especially helpful as a result of it asks inquiries to youngsters instantly, fairly than surveying their mother and father, who could also be unable or unwilling to reply questions precisely. KFF evaluation of YRBS information has proven that giant shares of teenagers experience persistent sadness and hopelessness, and that teenage ladies skilled a pointy rise in suicidal ideation during the pandemic. Lately, the YRBS has requested respondents about their sexual orientation and gender id, and the info has been used to highlight substantial psychological well being disparities amongst LGBTQ+ highschool college students, in comparison with their non-LGBTQ+ friends.
A number of of the opposite datasets taken down (not less than quickly) relate to HIV/AIDS within the U.S. in addition to world well being efforts world wide in low and middle-income international locations, together with however not restricted to:
- CDC AtlasPlus: an interactive database with about 15 years of surveillance information for HIV, viral hepatitis, STD, and TB, in addition to information on the social determinants of well being. (Knowledge pertaining to the Ryan White HIV/AIDS Program additionally stay offline as of this writing, together with reports and databases.)
- PEPFAR Data Dashboards: PEPFAR, the U.S. world HIV/AIDS Program’s complete, up-to-date on-line information portal of program budgets and expenditures by nation and repair class, amongst different variables.
- Demographic and Health Surveys (DHS) databases: an ongoing set of nationally consultant family surveys with inhabitants, well being, HIV, and vitamin information from greater than 90 international locations, information downloads.
- Foreignassitance.gov: The U.S. authorities’s web site with all international help information by nation, funds, expenditure, program, going again greater than 20 years and created to extend assist transparency (this web site is now again on-line).
Different federal dashboards and indices have been additionally offline, not less than quickly, together with however not restricted to: Area Health Resource Files (a useful resource of information on well being professionals, hospitals, and financial indicators), CDC’s Social Vulnerability Index (Census-based socioeconomic information used for catastrophe planning, response and restoration), and the Environmental Justice Index (Census tract-level information used to establish populations dealing with adverse environmental, social and well being elements).
Whereas not the main target of this temporary, different well being data meant for the general public has additionally been eliminated or modified, which may have implications for entry to and receipt of companies and different interventions.
